Plenty of frustration, few answers for sick 9/11 workers
By DEVLIN BARRETT
NEW YORK- More than four years have passed since retired fire marshal Joe Sykes walked into an asbestos-choked dust cloud on Sept. 11. His health deteriorated so badly and so fast that he had to retire a year later.
"I think a lot about what was in the air, half of it you don't even know what was there, but everything was pulverized, it's not like you saw computers or anything in the debris. We were breathing everything, animal plant or mineral, you name it," he said.
Government experts are still trying to figure out exactly what that exposure did to Sykes and thousands of others on Sept. 11, but they will not have answers anytime soon.
Health officials say it could take 20 years to find definite links between the toxic cloud and subsequent diseases or deaths, because most cancers take that long or even longer to develop and decades of statistics are needed to prove a relationship.
"It seems like they're trying to do the right thing, and it's good to help people in the future, but they don't have any answers for us now," said Sykes, who worked at the on-site morgue at ground zero until the end of October 2001, when he went on leave. "It's frustrating for me, and frustrating for my family. When they get those answers, are we still going to be alive?"
The issue has taken on greater prominence in recent months amid reports that some Sept. 11 workers are dying of various ailments that their families blame on ground zero exposure.
Spurred by New York lawmakers of both parties, Congress has spent more than $100 million (euro82 million) to provide health programs for ground zero workers. Sykes signed up for one of them, a screening program run by Mount Sinai.
"I've done the questionnaires and I've gone for medicals. They send a questionnaire now and then and I fill it out and sometimes they call me and I answer questions."
In an aging city office building in lower Manhattan, less than a dozen city workers and researchers are working on a project they hope will eventually answer Sykes' questions. The World Trade Center Health Registry has gathered information from 71,437 people who worked at ground zero or were in the area at the time of the attacks.
Described by New York City's deputy health commissioner Lorna Thorpe as "a Rolodex" of those affected by Sept. 11, the registry is the largest such effort in the United States.
However, the registry conducts no medical exams or screening like the program at Mount Sinai. Instead, it uses mailings and phone calls to collect updates from people who signed up for the program.
Mount Sinai's program is designed to track symptoms among rescue workers and construction workers; the city registry is a much broader effort to monitor, over a period of decades, a huge population including everyday residents who happened to be nearby in case they develop health problems.
It costs the city $46 (euro37) per person per year to keep in touch with the registrants, who will receive the first follow-up questionnaire this month, a 12- or 16-page form asking for more details of their exposure, and an update on any symptoms.
Thorpe and researchers warn it may take 20 years before doctors can answer what Sept. 11 did _ and did not do _ to the legions of emergency personnel, civilians, and others engulfed in the airborne remains of two 110-story buildings.
"We're trying to identify as quickly as possible mortality trends, but the challenge is, how quickly can we provide information that's robust?" said Thorpe.
Critics of the health programs say the research is useless if it cannot be used to help those who are suffering now.
"They've done nothing with all that data," said Pat Lynch, president of the city's police union, the Patrolmen's Benevolent Association.
"If we're looking 10 or 20 years down the road, then we're talking about a body count. I'm not looking to do a body count, I'm talking about finding out what problems exist and treating them. We're not there to fill someone's filing cabinet," said Lynch.
Even a running death count is beyond the ability of the registry. City officials say they do not currently know how many ground zero workers have died, and it will take many more months to cross-check their registry against the National Death Index, considered the definitive record of deaths in the United States.
However, that index lags by as much as two years, so even when the registry does complete its first post-Sept. 11 death count, it will only reflect deaths from 2004 or earlier.
Dr. C.J. Yzermans, an epidemiologist from the Netherlands Institute for Health Services Research specializing in post-disaster public health, said the Sept. 11 health programs and the press stories about illnesses have made the situation more confusing for survivors.
Yzermans said his past research found intense media attention on catastrophic events spurs more health complaints.
"People learn their complaints and diseases from the papers. The papers are enlarging complaints, and then you have epidemics among survivors, but it's only on the symptom level. They do not have disease," said Yzermans.
Many experts agree that there has been powerful anecdotal evidence recent about the debilitating effects of working amid the dust cloud of ground zero. But other cases are less convincing.
As an occupational safety officer for the federal government, George Allen was assigned to ground zero for a week in November 2001.
Allen recently had a section of his intestine removed as he battles stage-four colon cancer. He does not blame all of his cancer on Sept. 11, but said the exposure spurred his disease.
"You can't ignore the anecdotal evidence just because it's anecdotal," said Allen. "I undoubtedly had some degree of cancer, but the World Trade Center promoted that cancer."
Through its worker compensation program, the U.S. government has taken a dim view of any injury claim not directly from the day of the attacks.
Allen, 46, was one of the 485 federal employees to file for workers compensation claiming injuries from the aftermath at ground zero. Virtually all of those claims, some 478, were either rejected by the government or abandoned. Of the claims stemming from the day of the attacks, the government approved nearly all 987 of those.
New York state received 8,491 injury and exposure claims due to the events of Sept. 11 or the cleanup effort. About 680 _ less than 10 percent _ remain unresolved, but New York state insists it still has no idea how many of its resolved claims were granted or rejected.
Allen, who wore a respirator when he was in the "hot zone," but not elsewhere, has his own theory as to why so many rescue personnel are sick.
"My job was to walk around and talk to the officers and give them guidance on what was safe. When we advised them to wear respirators in the zone, a lot of them would literally give us the finger. I think they had survivor's guilt so they refused to use them."
Like most Americans on Sept. 11, Kevin Riley first learned of the attacks by seeing them on live television.
Riley, 48, rushed to the Staten Island firehouse where he worked. The regular shift had already left, but Riley and others commandeered a city bus to get to the Staten Island ferry, where other off-duty firefighters had assembled.
As the boat docked in Manhattan, the second building collapsed, and the men made their way north to the site.
Riley ended up working on the debris pile until March, and retired in 2003 on a medical disability due to greatly reduced lung capacity and serious heart problems.
As a rescuer who approached from the south, Riley would be of particular interest to researchers, because one untested theory is that those who came to ground zero from that direction may have been exposed to more harmful airborne material as the cloud moved toward them.
Riley chose not to enroll in the medical screening programs.
"Some guys say it helps and some guys say it doesn't, I don't know. We're all in the same boat, walking around huffing and coughing," said Riley.
"Hopefully that's the worst that will happen to us. I guess we'll be crossing our fingers for the next 20 years."
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